I woke up feeling reborn. The world seemed bright and shiny, but I realized something was up when I saw the tv diagonally up on the wall and I was wearing the wonderful hospital gown. I remember Dr. L sitting next to the bed and smiling at me. She kept asking me how I felt and I just kept repeating reborn. My face felt like it was going to split from the wide grin. My husband was to my left and while the pain was there, it seemed muted somehow. The phlebotomy team would come early in the morning and I remember the one who seemed to take that little bit of extra time to share a small portion of the real them. I remember thinking how wonderful their energy was towards me. They might not know how much that means when shits just hit the fan and you don’t quite have your bearings yet. I had spent the past few years thinking my life was over. The pain had consumed every aspect of my life. I couldn’t read. I couldn’t watch a tv show or movie. I couldn’t leave the house . I was scared. I was confused. I had been taught that doctors are the ones you trust. They get paid the money that allows them to pretend to care, listen and small chat about their yearly vacation to Alaska. You have to fly a private plane. To get to where this guy would go. The pills were so many. The patches took precident too. There has to be another way I thought.
The discovery channel had the Alaska wilderness tv show on, or maybe it was the gold searching one. It was my touchstone. I needed to come back. He had died on me. He was falling apart. I wanted to come back for myself. I couldn’t take my pills that morning. He had to call 911. I don’t know if I fought the EMTs or not, but I must have because I had large purple bruises all over my arms and an ugly blister that the hubby thinks was from a strap of some sort. I also had to learn how to sleep with a full face mask while sleeping in a hospital. If you’ve never slept in the hospital, count your lucky stars. The good ole Doctor g, I guess, didn’t know, or ask the right questions, or I didn’t tell him, or maybe we didn’t know what to look for, but I was experiencing what is called sleep apnea. Many people have it. I wasn’t aware of it. You stop breathing while sleeping. I had noticed that I wasn’t dreaming and I missed it terribly. I remember asking the hubby if something was wrong because I wasn’t dreaming. I also had the clock. The clock test, it kind of saved my life too. It stuck in my head that if you couldn’t draw a clock, that something’s wrong with you. I repeatedly would draw that damn thing. Small notepads had my attempts on many pages. I would later, after getting out, ask the hubby if he still had those notebooks. I remember asking and him saying no, I threw them out. That’s probably for the best, as moving on has been one of the best drugs there are.
might as well..
one of my childhood memories, as i was just reminded, is that my mom took me to the dr at 8 to be told how to lose weight.
I went to my first concert as a young child. The first concert I chose to go had a boy band wearing matching shirts playing to an adoring crowd of prepubescent girls screaming their heads off. Months later I found myself at a heavy metal show that would be my foray into not pop music which would be my salvation. 20 years of following phish around had slowly eroded into the incapacitated state I found myself in when the organs began to shut down and my breathing became compromised.
I spent 7 days in the hospital. 3 of them in the ICU. I had a tube down my throat and was given narcan to combat the opiate withdrawal I had to go through to put me on the road to recovery. As the fourth day came around. I was somewhat used to the early morning intrusions to both my skin and my sleep. Late morning rolled around and the physical therapist came by. She wanted me to walk down the hall. I was on oxygen thanks to the respiratory failure caused by what I guess is the liver failing to clean out the opiates on my system so depressed my breathing. I expected to have no problem walking but as the woman pulled the portable oxygen tank around to my right side, I swung my legs around and slowly put weight in them. It was a shocking surprise to find myself very weak and scared at the same time. I stood up, wobbled a bit, and gathered myself to make that first walk. Before this hospital stay, I walked from my bed, to the chair, and to the bathroom and that’s it for the day. I couldn’t draw those clocks. I was fucked for the rest of my life I had thought. But getting clear of those opiates, I knew immediately that I had a second chance. I walked about halfway down the hallway, turned around and walked as strongly as I could and when back at my room, I collapsed in the bed in relief. This was going to be hard.
The day passed and so did another one. Mentally I was recovering faster then physically. I had been misdiagnosed with an auto immune disease over a decade earlier and treated with steroids, nsaids and opiate pain medications.
I woke up on that last day in the hospital knowing that it would be my last day. I had been on furosemide to help flush out my kidneys after they failed and was finally off of them. They are not a fun drug. They make you urinate numerous times an hour, but is necessary if certain organs aren’t working correctly. My last dose had been the day before and my last test would be to do the stairs. I’ll admit it now. I was scared to death to attempt them. I was not only weak from the 6 days in the hospital, which causes you to lose a large percentage of your muscles, but I was recovering from years of complete inactivity due to weight gain, depression and anxiety. Along with having to try and walk and climb stairs, I had to work out a plan to get durable mnedical equipment from a company somewhere in the city, My O2 stats were low and they were requiring me to have oxygen when going out of the house.
I’m elated..and im having the worst night of my life. Its always like that isnt it.
Much love to all of you out there…thank you..you know who you are
time to take a breather – it’s nice to make the brain work again. I’m not gonna lie. But things are starting to surface that are definitely difficult to think about. It seems as though every time there is a death, something new begins. And it seems as though change brings that about.
Staring at your walls, observing echoing footfalls…this one is for you
It was my birthday and I was turning 16. Maybe even 17. I had never had a boyfriend and I was dating Sam. He was the kindest most sweetest, most thoughtful boy I had ever met. He would set the tone for me for men, for sure, since my dad sucked.
Staring at your walls…this one is for you
He’s sleeping now. We are on totally different schedules, but that’s ok. I think he’s finally starting to get it. That there is nothing to be afraid of. It will all work out in the end the way it is supposed to. I explained my end goal the other day. I didn’t like the response I got when I told him. I was told recently that you can’t control what others do in reaciotn to you, you can only control your reaciton to them. I am really trying to put that into action every moment of my life.
So I ask you why, if I’m swimming by. Don’t you see anything that you’d like to try?
It’s still kind of fuzzy. The future. I have had a glimpse of the lighthouse’s beam and know where the rocks are but need to remember to trust myself.
Sam gave me a large, wrapped box for my birthday. I opened up the big box while sittin on the brick fireplace of my childhood home. I remember his blue eyes twinkling and the glint of the color of his hair is still a bright light in my memories. After I got the first layer of wrapping paper off the box, I realized there was another layer. It’s such a simple thing, wrapping a box, within a box, within a box. It has been over 3 decades since that present, but I still remember it as if it were yesterday. Things like that make a huge impact on people. I try to remember that myself. You never know when you just might make an indelible mark on another person.
From the bottom, from the top
I saw Sam at football practice and gave him a hug (I think?) And we drove away in the same direction. I had given him a mix-tape with some of my favorite songs on it. Everything from Wish you were here to sounds of silence. Sam and I pulled up at Woodward and Hickory Grove and I went one way and he went the other. He waved at me, and I can still see his big hand and glinting smile as he headed towards the mall with his little brother. Unbeknownst to me, that would be the last time I would see Sam. He would be tragically killed 15 minutes later when, not wearing his seatbelt, he ran a red light and was stuck by another car, killing him. I don’t know if this is true, but I was told by someone that that mix tape was found in the car after the accident. That might have been my first clue that music, is a little bit more then just a passing fancy.
Silent in the morning, suspended in the trees, lunchtime comes youve found your voice, it brings me to my knees.
So it’s come down to this. I accept the challenge. Chatted up the CL guy and asked him about clouds and gigs and turnkey. One month he said. Expect it to take one month. Give me two weeks. 😉
Two of em, one 5g. Now..time to find some way to turn it from the bits and bytes that it is into something we can slide in and experience.
THAT too is what it’s all about my friends
Ready Player One..one of the best books I’ve read in the past few years. I remember that one because the simliarities are so striking and it makes me want to turn things off. But then I turn on the music (led zep pandora today) and it all starts to melt away. Things are finally starting to smooth out. We are able to communicate again. JP. *clap clap clap*
I’ve found that fuzzy brain makes things super hard. As do other things that are obviously the synapses or connections. Was it the opiates? I still get a rush sometimes. The same one I got when I’d feel a pill coming on. I have a lot of harbored anger towards Dr. G. But at the same time, I did what I could when I went down that path and I’m glad I did.
Sleep is fleeting. I have all of these choices and have no idea which one is going to work >patience, one of my worst issues..lmao….
Called about fiber….got a quote..wrote it down..made no sense..didnt schedule..yet cables are coming or are already here? Hrm
Message from phone company saying we have an appointment to have those cables installed..then cuts off before time is said..Hrm
Still following signs. Not sure what to do next. Feeling lost. Grounding took a lot out of me. Don’t know where to go. Pain is bad. Was WELL worth the friendships made today.
I swear I saw a message in the upper right hand corner of my browser the other night, but now I wonder if it was just a bot. I saw a program to write bots. I bet I could teach myself. That’s the plan for the next few resting days that are going to be necessary after my almost 12 hour jaunt into the world. Most of it was spent with kind folk who share similar interests and I’m very glad that we connected. Bedrest, well, chair rest, will be required in order to live. Sleep. Not sure if that is going to happen.
When he read out what he had written for the review describing the limitations I have, it was a swift kick to the gut. A reminder. Today. Asking to use the Elevator at Vista House. It was a huge step for me. I stayed positive and engaged the folks who were helping me out. I tried to ask questions about the beautiful building and they answered with lots of facts and smiles. This is the kind of world I live in right now. I don’t know what to do to bring this little slice of heaven to the rest of the world that’s going through so much. Yes, I have fears. Big ones. He will die within days of not having his medication. I know what it feels like to be without him. Be without him alive. He was without oxygen for 5 minutes. I sat on 911 with the operator pleading with her to make them hurry up. At least that’s what I remember. I remember scary. I remember the spittle. I remember him being stuck. I remember Ty being here. I remember Ty talking to the 25ers. I remember seeing either them compressing his chest, or a shock perhaps? I’m honestly not sure. For a long while, I relived every damn moment, but that has eased as the years have gone by.
Now, it’s my own issues that I’m dealing with. I think I’m learning how to be an adult finally maybe? Only took a zillion years I guess. And a lot of sweat, pain, tears, and hugs and love. Or maybe we don’t ever fully mature into that devil.
Maple gave me a spotify list, with songs and descriptions and I think I just might give a listen to this playlist that I didn’t even have a log in for. If I wasn’t on drugs, I’d be worried that I’m on drugs.
I feel like I’m on Mr. Robot. Or maybe even Black Mirror. Haven’t decided yet, nor will we know for awhile I think.
Been awhile since Ive thought about my past life. SPent years working on a community on the software program DC++ where you ran their software, but ran hubs with individual rules separate from the software. Kinda like being a den mother and helping people work the software along with the other troop leaders. And in return you get MUSIC. LOTS AND LOTS of music. See.when you are in pain, you need a LOT of distraction and doing things like making gifs and collecting photos and pleasing others all produce that little thing we call dopamine, or is it serotonin, or maybe epinephrine, we all have one or all working in tandem with each other to help us get through this damn thing we call life. Collecting music which helps me reproduce either memories from concerts I’ve been to or helps to induce new ones, is my drug.
Some of you may be familiar with the name napster. We ran a counter program called shnapster where we traded the compression form SHN with each other via the bittorrent technology. In that time, of unlimited up and downloads you could just endlessly sit on your computer and obsessively collect. Which is what we did. Something that happens in all forms of audio and video these days. An archivist. That’s it. I want to do that. Like Shapiro.
My own harddrive. If I remember correctly I had two. I ran a server actually now that I think about it. He and I had hours to spend and just be together and listen to music. He for his ptsd, me for my fm.
Looks like DC++ just updated perhaps? I can’t seem to find it anywhere. I’m just following along like a dog who’s found a new family. Not necessarily my owner, but a family that loves me none the less. I am not comfortable in their home, but maybe someday? I just got the updated RAM, and now I have to sort out this current mess, but I’m slowly building CM’s collection in my drive. I’m thinking I’ll count it up and figure out h ow much to put into a memory stick. Preserve it. Just in case.
I’ll just keep plugging along and doing what feels right as that seems to be working out well right now.
Came back haunted..
Thats the best way to describe what’s going on with me. While I still retain a vast majority of my personality there is definitely a darker tinge that I can only recognize from earlier versions of myself. Seeing the path right in front of me, there are still twists and turns and I am just hanging on for dear life. Some things can be explained. Other things can’t be. I’m flying by the seat of my pants.
I have very little memory of the days beyond thinking my life was over, seeing Ghost, and slowly starting to come back to life. In October I made the brave choice to go see Ghost and that was the first big mountain I climbed. I had a fantastic time. The staff at the Roseland were impeccable and treated me and the love with respect. The cane was a hint perhaps? It’s frustrating that without a visual aid, people just assume you are faking. I look forward to April and view what’s going on right now as a sort of a recharging station. I’m just Telafree 43.2.
The biggest trip the past few months has been the converging realities that are slowly starting to enmesh themselves in a different manifestation then I am used to. I have always believed in following signs, but have spent most of my life ignoring those signs and just doing what I thought I was supposed to do. Watching the right movies, buying the right clothes. I sought out love and received that. I would like to take that love and grow something with it. Something that will outlast us. I want to make Ralph and NJ proud of me.
After October and my achievement, I needed another goal. I have learned that I am a goal-oriented person. I need a point A and a point B. I can find my way there, that isn’t the problem. And of course it will not always be this way either. The one thing that isn’t temporary is life. Once it’s gone, it’s gone. I’ve seen it with so many people. From grandpa to Sam, to me coming close the first time, my father, my grandmother, I think that’s all for right now, but that’s more then enough. I have started helping a local charity and even if I only do one hours worth of work, it was worth it to me. What they are doing is important and whether this is a destination or just a stepping stone, I am down one path, but who knows where it will split off, and whether I’m going up, down, left or right.